- Health Resources & Services Administration (HRSA)
- 2/4/2014
- Standardized Collection of Standardized Clinical Data
- Use of Clinical Data for Research
STATUS: Completed Project
BACKGROUND
Community Health Applied Research Network (CHARN) is a network of HRSA’s community health centers (CHCs) and universities. CHARN was established in 2010 to create an infrastructure for this safety-net community to carry out patient-centered outcomes research (PCOR), including observational and interventional studies among underserved populations, ultimately leading to improved patient care and outcomes.
PROJECT PURPOSE & GOALS
The participating CHCs, representing more than 1,000,000 diverse safety-net patients, are located in nine states across the country, and all have provided standardized data to the centralized CHARN Data Warehouse (CDW). To realize the full potential of the CHARN infrastructure for information sharing and research, CHARN expanded and enhanced its data registries and to make its data available to non-CHARN researchers conducting PCOR.
Project Objectives:
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Expand and enhance its centralized CHARN data warehouse by adding new data elements and covering a longer period.
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Build capacity for collaborative research within and among participating health centers, clinicians, and investigators in all the phases of research.
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Create a de-identified analytic data file and codebook for researchers outside the CHARN network.
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Develop and implement a process for researchers outside of CHARN to access CHARN data and infrastructure.
PROJECT ACHIEVEMENTS & HIGHLIGHTS
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CHARN used the PCORTF funds to maintain the PCOR infrastructure and expand the data warehouse with new data elements and additional years of data. Specifically, the warehouse was expanded to include patient vital signs and smoking status and now captures clinical encounters for all patients and all conditions seen between 2006-2013 (formerly, the warehouse covered 2008-2010).
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To increase the accessibility of the CHARN network to outside researchers, a de-identified analytic file and associated data codebook were developed.
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CHARN then established a process for investigators within and outside of the CHARN network to access the CDW through the development of a data access plan.
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To contribute to quality improvement in the safety net, CHARN established a Steering Committee and generated four papers and four proposals to demonstrate the utility and diversity of CHARN-supported research.
PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES
Publications:
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The project team published a journal article in October 2014 in AcademyHealth’s eGEMS titled, “The Community Health Applied Research Network (CHARN) Data Warehouse: a Resource for Patient-Centered Outcomes Research and Quality Improvement in Underserved, Safety Net Populations.” The article can be found here: https://www.ncbi.nlm.nih.gov/pubmed/25848623
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In summer 2015, the project team published a journal article in the Program of Community Health Partnership titled, “Results of the Community Health Applied Research Network (CHARN) National Research Capacity Survey of Community Health Centers.” The article can be found here: https://pubmed.ncbi.nlm.nih.gov/26412764/
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The project team published a journal article in May 2016 in the Journal of the American Board of Family Medicine titled, “Impact of Social Determinants of Health on Patients with Complex Diabetes Who Are Served by National Safety-Net Health Centers.” The article can be found here: https://www.jabfm.org/content/29/3/356
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In October 2016, the project team published a journal article in Substance Abuse titled, “Medication-Assisted Treatment for Substance Use Disorders within a National Community Health Center Research Network.” The article can be found here: https://pubmed.ncbi.nlm.nih.gov/27218678/
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The project team published a journal article in June 2016 in the AIDS Patient Care SDTS Journal titled, “HIV and Hepatitis C Virus Screening Practices in a Geographically Diverse Sample of American Community Health Centers.” The article can be found here: https://pubmed.ncbi.nlm.nih.gov/27286294/
RELATED PROJECTS
Below is a list of ASPE-funded PCORTF projects that are related to this project
Maintenance and Support of the Chronic Conditions Warehouse (CCW) for Comparative Effectiveness Research (CER) - The Centers for Medicare and Medicaid CCW provides researchers with Medicare and Medicaid beneficiary claims, and assessment data. The CCW data is linked by a unique beneficiary key, permitting researchers to analyze data across the continuum of care in Medicare and Medicaid administrative data. The PCORTF project provided maintenance and support for the CCW database and analytic files as well as provided one year funding to support 15 PCOR focused research studies conducted via the CMS Virtual Research Data Center (VRDC). Approved researchers using Medicare and Medicaid data may be permitted to link clinical and other data for their research projects.
Expanding Data Collection for the National Program of Cancer Registries (NPCR) for Comparative Effectiveness Research (CER) - Enhanced data collection and data linkages between central cancer registries and other health related datasets can provide researchers with essential real-world and population-based data for CER. This project built upon previous funding provided to central cancer registries operated by 10 states—part of the National Program of Cancer Registries (NPCR)—to collect detailed treatment and outcomes data from electronic data sources. The PCORTF funding extended longitudinal data collection for a subset of cancer patients in these 10 states, enabling patient-level CER of cancer outcomes, and to improve the tools and timeliness of cancer reporting to the Centers for Disease Control.